Baricitinib (Olumiant) side effects - did they improve over time?

[thomastheEP]

I finally took the plunge to have Olumiant on Monday 22nd after getting my blood tests/vaccines etc. It's been a bit of an up-and-down story so am wondering what other people's experiences have been like.

This is a draft of what I'm going to email my Rheumatologist but thought it was worth hearing some other people's experiences as well.

Background

30-year-old male diagnosed with RA last year. Have failed MTX and Arava due to reactions/bad side effects. Needing 10mg Pred to keep symptoms at bay and live a normal life.

Side effects

I started it Monday night (22nd). I didn’t have any side effects for a while and then developed some lower abdominal/lower back discomfort overnight. This backed off during the day but then came back on Tuesday afternoon so I didn't take it on Tues/Wed. By Wednesday I was back to normal.

I decided to try it on Thursday morning. This time I didn't have any gut-related side effects but did have tinnitus in my right ear for most of the day. I again was concerned so took Friday off.

I then tried it on Saturday and Sunday. This time I didn't experience any obvious side effects but did feel a little tired/achy in my muscles and had a few pimples. Overnight on Sunday, I again had LLQ abdominal pain when lying down which lasted about 1-2 hours, I then slept and it went away. Monday is a bigger work day so I decided to have another day off.

On Monday I felt my RA symptoms were basically gone so I reduced Prednisolone to 7.5mg with no issues. Tried Olumiant again on Tuesday (today). This time the main effects were that I felt a little spaced out and tired enough in the afternoon to need a nap which isn't normal for me.

RA symptoms

With respect to my RA symptoms, it had a strong positive effect within hours (if that's even possible) and has done so with every dose. I'm essentially symptom-free, even the day after when I take a day off Olumiant so it's clearly working.

Questions

1. Have you experienced any of the above side effects? If so, did they reduce with time?

2. Has your rheumatologist advised/allowed you to reduce to 2mg or take olumiant every second day?

3. Please feel free to share any other interesting comments relevant to using Olumiant.

[Amnesiac3637]

If you’ve only been on Olumiant (Baricitinib) for less than a fortnight and are taking it, not taking it and dropping your Prednisolone dose from 10mgs suddenly to 7.5 without tapering I’m not surprised you’re having a few problems……….

Olumiant can work very fast - within days - and the usual side effects are slight dizziness, nausea and possible gastric upset until your body decides it’s ok. Unless your rheumatologist has decided you’d have problems the normal dose is 4mgs daily which you would continue with. The lower dose and intermittent is usually for people who are older or who have problems with their bloods.

It’s not something like Paracetamol or Ibuprofen you can take now and again. You need to continue to take it every day ( or night and sleep through the side effects) and let your body get used to the drug. You’re not doing yourself any favours skipping days. If it really doesn’t suit you in a few months then you can review it with your consultant.

You need to be very careful dropping your Prednisolone so fast from 10mgs to 7.5. This is a drug which needs slow tapering down to lower doses especially if you’ve been on it more than 3 weeks. Your tiredness and feeling spaced out is likely to be due to your body reacting to the lower dose of Pred.

I have experience of both drugs having had severe RA for 34 years. Baricitinib worked brilliantly for me straight away and apart from the odd niggle to start with carried on being very effective for three years until I got Covid. I’ve been on Prednisolone for the same amount of very long-term time and have to be extremely careful about lowering a dose if it’s been raised for any reason so am ultra cautious and taper with my rheumatology team’s advice. Of course, if you were told y.ou can drop your Pred dose so fast then please ignore this!

I hope you settle on both drugs and have the same relief from pain and fatigue that Olumiant gave me but please take your rheumatologist’s advice - they are the experts.😀

[helenlw7 in reply to Amnesiac3637]

I agree with your comment completely. I’ve had RA for 20 years since diagnosis, on reflection, it started when I was a teenager. I was on Baricitinib for about 3 years alongside mtx and 10mg of pred. It worked well for me until I got a series of chest infections so came off it.

[thomastheEP in reply to Amnesiac3637]

Thank for for your response, Your point is well taken and was in part what I needed to hear.

Having had Leflunomide last year give me acute collitus out of nowhere (confirmed by my Rheumatologist) and land me in hospital, I'm naturally a little hesitant with these drugs. However, I agree I need to take them as prescribed and have done so after reading this.

In terms of Pred. Again, I agree on the timing, however, this was the suggested taper by my Rheumatologist. He advised dropping 2.5mg per week if tolerated. I was completely off Prednisolone late last year as Leflunomide was working well and have only been on 10mg for a few months and 5mg for 1-2 months prior. That being said, I may consider a slower taper this time as it wasn't a great week!

I'm still experiencing light sensitivity, intermittent right ear congestion and a few other side effects, however, I am seeming to tolerate it better. I will review with my GP next week and then email Rheumatologist if needed.

[Deeb1764 in reply to thomastheEP]

This was after 5 fails for me on RA drugs the one that helped me so so much. So take the plunge as it’s a good drug and like any medication you might have a few days or couple of weeks whilst the body adjusts but for me I was very happy.

[KittyJ]

I agree with everything Amnesiac has said. Messing about with your meds is never a good idea, especially pred. Don’t go looking for side effects, all those things you’ve said can happen without taking baricitinib. Pimples, stomach ache, tinnitus, feeling tired and achy are all common things. Give your med time as any side effects can lessen as your body get used to it, but that means taking it as prescribed 😊 Good luck, it seems you may have found your med.

[1330-30]

I had side effects for approx a week but continued to take the medication. The results were and still are amazing I feel so much better, stick with it. Good luck.

[Sureshj]

I also could not take MTX due to other conditions. I am using 5mg prednisolone . i tried to reduce in steps to 2.5mg, I did not have any side effects, buy RA became difficult to manage. I went back to 5mg. That's all is my experience with prednisolone.

[Sanurita]

I stopped taking mtx, as I started to develop lesions on my body and the mtx was for psoriasis or exzma, so I am taking acitretin an also have developed extreme tiredness an forgetfulness, a little spaced out as you say. the cause is down to inflammation apparently don't know if this helpsDon't think stopping an starting the meds is a good idea though, good luck

[Alicepirate]

I'm on olumiant too hard to manage side effects before good effects and work as no chance of time off presently and working 7/7 days not ideal but imagine lots of people the same.

Ive been told to take every other day 4mg because of really bad itching plus GI stuff going on but again with RA the GI stuff can come and go so don't want to hang everything on same peg. No good effects yet but I will keep going as flare is awful presently struggling to get dressed or hold toothbrush but luckily I work from home so can wear the classic day pajamas . Anyway overshare there but basically I take I have side effects no good effects yet but early days only been on a few week, rheumy advised every other day due to the itching which is still driving me nuts.

Hope you doing well on it now

[thomastheEP in reply to Alicepirate]

Some of the symptoms have lessened over time but the eye and ear symptoms remained the same or worsened slightly. I saw my Rheumatologist this week and we've decided to give 2mg a go. So far having a good effect on my RA with much lessened side effects but I'm still on 5mg Pred. Test will be if i can get off it and the RA is still under control.

Hope yours turns the corner but best to be cautious I think as these drugs are very powerful. Best of luck